Starting over and need advice

[Imweljungyst]

Hi. Please skip to last 2 paragraphs if my history is not necessary:

Gastro history

Diagnosis : Celiac Disease 2011 and Microscopic Colitis 2017

1/2011 had a routine colonoscopy and had chronic diarrhea for 5 years after that. Was diagnosed with Celiac disease by Gastro #1 after an Endoscopy, that same year. Instructed to be Gluten free. Lost 20 lbs .
Followed the Specific Carbohydrate Diet.
Went into remission in 2015 for about a year. Chronic Diarrhea returned despite being strictly Gluten free.
Gastro # 2 ,did colonoscopy, and then a Capsule Endoscopy and neither showed positive reasons for symptoms. Did Breath test which showed positive for SIBO.
Continued on SCD diet combined with Low FODMAP diet. Took Rifaximin which helped but relapsed after stopping. Minimal improvement
Functional Medical Doctor recommended an AutoImmune Paleo Diet, much like the SCD. I followed his recommendation. Also completed ALCAT Food Intolerance Test and numerous stool tests including a DNA Stool test. No indication of causes for symptoms. DNA stool test did indicate high levels of C Diff and GP referred me to Gastro # 3 who does Fecal Transplants. Gastro #3 tested and ruled out C Diff problem stating that DNA tests were highly sensitive. Tried round of Rifaximin but this time minimum effectiveness to reduce sxs.

Gastro #3 suspected Microscopic Colitis and did a colonoscopy to confirm this. Took 2 month course of Budesonide and experienced remission until I stopped and relapsed. Stayed on Autoimmune Paleo diet and took Loperamide as needed but not very effective. This was in 2017. In September 2019 I was having diarrhea 6-10 times a day. I went back on Budesonide 9mg for 2 months with Gastro #3's blessing to stay on longer and wean more gradually. I stabilized with normal #4 stools and continued with stability during month #3 on 6 mg Budesonide. Month #4 dropped to 3 mg Budesonide daily and was mostly stable with a rare incident of loose stools. Month #4 cut down to 3mg every other day and stools were a mix of normal and some loose. After a few weeks I went to 3 mg Budesonide skipping 2 days off and taking one on the third day. This showed an increase of loose stools. Today I had a pretty serious Flare with multiple large volume watery stools. My diet has been the Same Autoimmune Paleo with a couple of new foods just this week which I will definitely cut out. My only regular transgression from the diet is I eat Jasmine white rice once a day and a small amount of almond butter neither of which have caused problems. I gained back the 20 lbs while on this course of Budesonide and also felt so "normal" but I stuck to my diet.

I would love advice from anyone on what I should do. Should I try taking an Antihistamine? I am planning to stop staking Budesonide for now as Is is not recommended long term. However I would love your opinion on increasing the Budesonie dose again. I pop Loperamide as needed.

Thank you.
June

[tex]

Hi June,

Unless you have stool test results from EnteroLab, you're flying blind (on food selections). Therefore, you probably have one or more foods in your diet causing you to produce antibodies. Exactly what are you putting into your mouth, including all foods, medications, supplements, and anything else (for example, licking stamps can cause a reaction)? Are you under severe stress? Sorry to be so nosy, but solving tough cases is seldom easy.

Welcome to the group, and please feel free to ask anything.

Tex

[Imweljungyst]

Thanks for the response, Tex!

I am 71 years old.

My basic diet is and has been:
Breakfast:green Tea( recently stopped black coffee...boo hoo)
2 T. Of a mix of coconut butter, banana and almond butter
Carrot soup made with bone broth , ground turkey, kale, Vital Proteins Collagen Peptides
1 Orange mid morning. sometimes water, lemon juice and a squirt of pure maple syrup

Lunch: white jasmine rice, steamed collards, coconut oil and salt
Chicken salad with Avocado Oil Mayo (made with eggs so I will stop using this) chopped leak, chopped celery( will stop since it is raw)

Dinner:Mixed steamed vegetables: Broccoli, sweet potatoes, Brussels sprouts, carrots, ginger, leeks, coconut amino acids sauce.Eat this alone or with fish.

Herb tea with Green tea, lemon grass, ginkgo Biloba

I just stopped eating Universal Bakery Paleo Bars which were no problem while on Budesonide. They are gluten free, egg free, soy gree but do have nuts and seeds.

Supplements: Vitamin D drops, B Complex, Vitamin K, Vitamin E, Selenium, Aged Garlic Extract, Vitamin E, Vitamin A, Lutein, Vanadium, and Jarrow Bone Up which has calcium, magnesium, Zinc, copper, D,Manganese and Potassium.

I only take supplements that rare free of gluten,dairy, soy, egg.

I do not eat night shades, dairy, gluten, eggs (except for the May which I will stop).

I drink Zero Filtered Water and add Alkazone mineral drops to it.

Medication: Candesartan Cilexetil 4mg at night for Blood pressure.
Loperamide hydrochloride as needed. No more than 8 per day.
I am weaning from Budesonide as stated in first text.

Stress: I admit that the current activity in our government and changes in our democratic process are stressful for me, along with Concerns about global warming. I balance this with regular medication and spiritual practice. I understand stress as I worked as a Clinical Social Worker. I retired in 2019 and this lowered my stress some!

I would welcome your suggestions since I have been at this for a long time and using Sarah Ballentines book Autoimmune Paleo. I have had intermittent success at times. I am afraid of losing weight again. The Budesonide helped me put back 10 lbs.

I am grateful for this site. Thank you,
June

[tex]

Hi June,

Here are my initial thoughts. Note that these are possibilities, but they may or may not apply to you, since I don't know your specific sensitivities.

Orange mid morning. sometimes water, lemon juice and a squirt of pure maple syrup

Virtually all of us have to avoid citric acid (ascorbic acid) while we are recovering. After we heal, citric acid is not a problem. That applies to oranges and especially lemons. It even includes tomatoes (since tomatoes are a fruit). Also, we have to minimize sugar while we're recovering, but maple sugar/syrup appears to be the form of sugar that's the least likely to cause problems in small to moderate amounts.

Herb tea with Green tea, lemon grass, ginkgo Biloba

Coffee is less likely to cause a problem than tea (for most of us), but if the tea is pure, without any risky additives, you may be able to tolerate it OK.

Supplements: Vitamin D drops, B Complex, Vitamin K, Vitamin E, Selenium, Aged Garlic Extract, Vitamin E, Vitamin A, Lutein, Vanadium, and Jarrow Bone Up which has calcium, magnesium, Zinc, copper, D,Manganese and Potassium.

I only take supplements that rare free of gluten,dairy, soy, egg.

These may be safe by themselves, but combinations of many vitamins and minerals while we are trying to recover, can prevent our recovery. Be especially careful with most multivitamins because they use the cheapest forms. Vitamin E normally is a soy oil extract these days, even when the label declares the product to be soy-free.

Here's the problem, concisely described in this quote from the article at the link below:

When natural forms of vitamin E are used (d-tocopherol), unless the source of the ingredient is otherwise specified, it’s safest and usually most accurate to assume that the source is soy (because that’s what it’s usually made from). When the type of vitamin E is listed on the label as dl-alpha-tocopherol, or as synthetic vitamin E, then it does not contain any soy derivatives.

The Problem With Vitamin E Supplements (tocopherols) for People Who Are Sensitive to Soy

Your blood pressure medication causes problems for some of us. See the research article at the link below. Asking your doctor to change the prescription might be helpful if you are one who reacts to angiotensin II receptor blockers. I take lisinopril, and it seems to be safe for me.

Angiotensin II receptor blockers and gastrointestinal adverse events of resembling sprue-like enteropathy: a systematic review

I hope this helps. Remember, these are just possibilities, but the more risks we have, the more likely that one or more of them may prevent us from reaching remission.

Tex

[Imweljungyst]

Thank you, Tex.

I will cut out the citrus for a while as I eliminate the egg mayo as well. The tea is all pure ingredients with no additives. However, I got discouraged with this recent flare and stopped my morning black coffee. Maybe I will try it again. Today was a more stable day for me after 2 days of frequent WD.

The Vitamin E that I take has no soy di-alpha tocopherol. However I am thinking I will stop ,supplements for now except for the Bone Up which has Cal and Mag and Vitamin D.

I totally forgot to mention that I am on Forteo for Osteoporosis after a broken hip in 2018. I have been on it for a year and have one year to go.

I will talk to my GP about the ARB blood pressure med and share the link. He is functional Med and has treated me for "IBS" so I am kind of surprised he recommended the ARB. I will say that my sxs started long before I started the ARB this September2019.

I will consider the Enterolab but I already have been diagnosed with Celiac so would like a specific test just for other foods if possible. I took the ALCAT a few years ago and it was marginally helpful but the folks on this site seem to really like the

Again, I am grateful to you for your time and advice and for this informative site!!

Be well.

June

[tex]

June,

Hormones definitely have a significant effect on MC, but we have no experience with Forteo on which to base any judgments. If nothing else you try allows you to reach remission, you may have to reconsider the Forteo. Osteoporosis is caused by one of two possibilities:

1. The malabsorption problem caused by gluten sensitivity

2. A chronic vitamin D and/or magnesium deficiency

Once we eliminate gluten from our diet, the first item is out of the way.

Virtually everyone's diet contains more than enough calcium. Vitamin D is necessary in order to absorb calcium in the bloodstream. Adequate magnesium is necessary in order to assist insulin so that it can transport the calcium from the bloodstream to the body cells (including bones) where it's needed. Without adequate vitamin D and magnesium, we can consume all the calcium (or calcium supplements) we want, but it will do us no good, because our body cannot utilize it.

EnteroLab results are always right on the money. You can order individual tests for specific foods if you want, rather than entire panels of tests.

Tex

[Imweljungyst]

Hi Tex,

Again great information! Thank you.

How much Daily Magnesium do you recommend? I just ordered a Magnesium lotion from Vitacost. I was always afraid of the additional Magnesium supplements taken by mouth to cause diarrhea.

Peace,
June

[tex]

The RDA for women is 320 mg. Food doesn't contain anywhere near as much magnesium as it used to (because of soil depletion), so I feel that it's a good idea to take at least the RDA (roughly 300 mg), because even healthy people only absorb about half the magnesium in their diet, or less. We (as MC patients) absorb less. Magnesium glycinate (chelated magnesium) is the least likely form of magnesium to cause diarrhea, although (as you point out) any oral magnesium can cause diarrhea for recovering MC patients.

Tex

[Gabes-Apg]

I agree with Tex's suggestions re your eating plan and supplements etc

my other suggestion re the meals - stick with protein and max 3 veg each meal. bland and simple. too many ingredients can be an issue in the early stages of healing
Broccoli, sweet potatoes, Brussels sprouts, carrots, ginger, leeks,

keep a food/symptom diary and track reactions to some of the ingredients. In the early stages of healing things like brussel sprouts / leeks were troublesome for me.